Why I Dislike Using the Word ‘Hope’ When Discussing Huntington’s Disease
I’ve been a part of the Huntington’s disease (HD) community since my mom was diagnosed in 1995. I was 9 at the time. The gene mutation responsible for the disease had been discovered two years earlier, and community leaders were excited about the potential of the discovery to lead to new treatments.
Since then, my brain has been infused with the word “hope.” I hoped that we were close to a cure, or at least a treatment that would stop or slow HD from taking over the body.
In 1995 my mom was just starting to show subtle symptoms, but she was still working, exercising, and living a full life. My family hosted a yearly fundraiser and told everyone in our community that their efforts were providing hope for our family and many others.
Many nonprofits and patient advocacy organizations have used the word hope. It’s in their mission, vision, tag line, and marketing. I helped start and run one of these advocacy groups, so I’m pointing the finger at myself, too. We held on to hope and truly believed there was still enough time for my mom to gain access to new medicines.
After my mom was diagnosed, I watched her slowly lose her ability to do everything, and then die in 2011. I’ve watched many other family friends lose their lives to HD. My hopes for them turned out to be nothing more than wishful thinking.
I know I won’t get HD thanks to a genetic test, but I’ve made many friends in the community who are either still at risk or who know they have the gene mutation. Many are now in their 30s, which means they’re staring the HD monster right in the face and hoping that they don’t become symptomatic. But I can’t hang on to hope anymore. It just doesn’t seem fair to anyone.
The HD community recently received two gut punches when Roche decided to pause dosing in its Phase 3 clinical trial GENERATION HD1, and Wave Life Sciences stopped its Phase 1b/2a clinical trials of two potential Huntington’s treatments. These trials were the furthest along and held the most potential for a Huntington’s treatment.
As I perused a handful of webinars and articles by patient advocacy organizations, physicians, and pharmaceutical companies, I kept seeing a similar message in response to the news about the trials: “It’s OK, because the pipeline of clinical programs is strong. Stay hopeful.”
I don’t disagree that the HD treatment pipeline contains the potential for success, but I wish we would all stop talking about hope like broken records. There is a large population of people with HD who have lost all hope because they don’t have time to wait for future therapies. I don’t believe it’s fair to keep pumping the word hope so broadly when HD is attacking people every single day.
I’m not saying that my hope is dead, or that I don’t believe we will ever have treatments for HD, but I can’t keep using that word. I think we should stop talking about hope and start talking about realistic expectations and timelines. Once we all better understand the reality, maybe it can light a fire under many of us to figure out how to get involved and speed up these timelines.
Can we each do a little more? That way we can rely on our own actions rather than on the hope of others.
In my previous column, “How the HEATED Project Can Benefit the Huntington’s Disease Community,” I talked about the Huntington’s Equal Access to Effective Drugs Project as an opportunity for us all to think differently and ask ourselves what more we can do to contribute. Maybe this is your opportunity to get involved and bring your unique skills into the HD community. Maybe this is your opportunity to start sharing your story and using your voice to bring about change. I believe that strategic actions can inspire the change needed to speed up new treatments for HD instead of just hoping others take care of it.
Please share your thoughts in the comments below or find me on social media. I look forward to hearing from you soon!
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